When I had my appendicitis recently I was left with very little memory of the day in the hospital. Each moment is like a puzzle piece and all the pieces are out of place. Punctuated by seconds of pain and long half-hours of my body cushioned by narcotics. I am reminded of the cohort of old men that gather every Saturday and Sunday at the restaurant where I work. Discussing how they are getting sicker and sicker. How the long light at the end of their tunnel will be THE LIGHT that comes after the darkness of death. I am reminded of my own chronic illnesses. I am thankful that the pain in my stomach was only my appendix. And not cancer or a baby I didn’t know about or my liver or kidneys. Only my little and useless appendix which had no function and could be removed the same day.
The doctor said, “we need to put a tube down your throat to breathe for you, we have to inflate your stomach and it’s hard on your lungs, you’ll be asleep for all it.” The pang of anxiety grew like a storm in my stomach but couldn’t replace the pain.
And then a nurse came and gave me some fentanyl. I knew some things about this drug (medicine) but only what I heard on the news. I am reminded that I’ve never been addicted to a drug like that and I am grateful. But I am also terrified.
Then I had the surgery. I woke up so cold I am reminded of winter. Dark and frozen and long. I recall the longest nights. The dead of winter. Water freezing when it meets the air. And now, six feet coming overnight, and the silence which comes on the heels of a Nor’Easter. It is the deepest silence you’ll ever hear. The greatest silence. The most powerful silence inflated over the whiteness of snow. Silence like a legend. The nurses covered me with five or six blankets. If it were more I don’t remember. The darkness and unfamiliarity of anesthesia wear on my body for at least the next week. I can’t imagine there is anything close to death. Aside from the night of my suicide attempt where I hallucinated my childhood cat. I’ve been told that perhaps she was an angel but I don’t believe in God.
In the minutes after surgery, I am basked in unrecognizable light fixtures. My brain grasps wildly for the last hour and a half. It’s made uncomfortable in the absence of time. Our thoughts are linear. I am reminded of our first night in our new house and how I got lost looking for the light switch along the wall. Hands sliding along the smooth wallpaper, confused and lost in a space which I was uncertain of. Uncertain of the door and the lights and how far the ceiling was from my fingertips when I threw my hands above my head. It felt like I was lost forever but I think I was half asleep. Dreaming is the only thing out of time that we can reconcile. The lights in the hospital where an unforgiving brightness. And laying in recovery my thoughts drift to a summer forest sewn up in green and bursting at its seams. Birds are loud and the harder you listen to the more birds you hear. I feel so far away from everything. Like I could lay down and die. Like I could decompose until my bones shown, wide and white against the summer sun.
Then there is soda in my mouth and the grogginess begins to subside. Sugar-water deliciously sweet against my tired tongue. Like lemonade on a hot day.
With my appendix removed I was sent home the same day. I was exhausted but the rocky pain in my stomach was gone. Only an ache was leftover from where the incisions were made. What had my infected appendix looked like? Like a clump of tissue? Like a worm? Like a tiny organ with a little definition? I know that the appendix is small. And that about one in five people will develop and appendicitis in their lifetime. Without treatment, I know that these infections are fatal.
Interestingly enough one in five people will develop mental illness in their lifetime. And while not everyone will need treatment, the more serious the illness the greater the need for treatment becomes. The earlier the detection the more successful the treatment.
I was lucky they caught my appendicitis early. It was caught before it exploded. This meant we could bypass open surgery. I received laparoscopic surgery and the so the recovery time was cut in half.
I was not so lucky with my Schizophrenia and Bipolar Disorder (Schizoaffective Disorder). My mental illness was not diagnosed for three years after its onset. I’ve been living with Schizophrenia and Bipolar Disorder for six years. Getting my symptoms under control after so long wasn’t an easy task. Being dismissed by doctors almost proved fatal for me. Years of grief led me on along a road of self-destruction. If I had received early intervention for my psychosis would it have been different? Would my first psychotic episode have been my only one? Would it have meant an acute episode and instead of full-blown, chronic, Schizophrenia?
It’s impossible to say. Myself, like too many other people, are lost to the system of psychiatric care. Allowed to fall to the wayside. Too many people will slip into drug abuse and homelessness. And on the brink of a fatal and final symptom. Death by suicide. One of the leading causes of mortality.
But we can continue to make changes surrounding the stigmatization of mental illness. We can change the way we talk about, treat, and support people with mental illnesses. We can change the statistics surrounding death by suicide. We can cultivate understanding about ourselves and others to encourage positive conversation surrounding mental illness.
Chronic illness, mental illness, an illness which endures is indescribable. It’s made up of pain which cannot be fully understood without actually experiencing it. People with illnesses and injuries, people like myself, aren’t placated into inaction. It’s not as if we don’t strive for the same things you do. It’s not as if we don’t want to excel. It’s that, to no fault of our own, one day we were thrust into a world inept to meet our challenges. This world wasn’t designed for us. The dreams we once had are dashed when we are told what we won’t ever be able to do again.
After my diagnosis of Schizophrenia, it was a death sentence. I’d never do anything worthwhile for the rest of my life. Called ‘profoundly disabled’. It was suggested that I live in a group home until I might end up in the hospital for a long-term stay. But almost four years later I’ve bought my own house and work part-time. I’m a student about to embark on a four-year program to a masters degree. I’m a published author and advocate for other people with psychotic disorders.
I’ve come so much further than any doctor would’ve dare predict. I am not afraid and in fact, I feel powerful. Like I have power over myself and a mind which doesn’t have my best interest at heart. Battles waged against ourselves are often the scariest. And certainly, they are the most difficult. But, when we face ourselves we experience a transformative journey. One which spurs us onward to wellness. That journey wasn’t easy for me and at times I lost myself. Those closest to me, those who were with me at my worst, know that at times I came close to losing the light. But I’m here now and ready to help those who find themselves on the edge like I once did. People with Schizophrenia are told there is no recovery. But I beg to differ. Hard work, harder work than you’ve ever done before, determination, and support dictates your own journey. Everybody’s recovery may look different in the end. But what’s most important is that you didn’t give up. Even when your symptoms were at their worst. And that you pushed yourself as hard as you possibly could.
The message here isn’t just, “don’t give up!” It’s, “recovery is possible, don’t lose hope.”
Am I scared to return to school with Schizophrenia and Bipolar Disorder? I’d like to say no. I’d like to say I’m not terrified. For me, my first college experience was populated by hospitalizations. And steeped in constant instability. Which is why I left. I needed to get better and I wasn’t going to if I stayed in school. My expectations were set too high and with every failure, I sank lower. There was a period, close to the end of my time at my school, that I was missing weeks of classes at a time. It got so bad in fact that the school actually had a meeting, or intervention, to discuss my health. I was present and actually shaking under the scrutiny.
Understandably I had been rotting away in my dorm room. I had not been keeping clean, not attending class, and not feeding myself. Holding me hostage was an undiagnosed case of Bipolar and Schizoaffective Disorder. Along with a rare case of Conversion Disorder that left me unable to walk. So college ended for me in a hospitalization. Then a five-hour long evaluation. And finally the long-awaited diagnosis of one of the more serious mental illnesses: Schizoaffective Disorder. The unholy union of Bipolar One and Schizophrenia.
My doctor put me on a max dose of Seroquel, an antipsychotic. And a heavy dose of antidepressant. Followed by some other medications. I took the time to recover physically. And then with the help of my still partner, we got an apartment. I went for another try of school but in the end, we left the area and embarked on the hardest year of our lives. Myself recovering from Schizoaffective Disorder and him battling his own depressive disorder. Jobs were very hard to come by and we lived off seven-hundred and thirty-five dollars a month. Each of us had our own sleepless nights.
But in the end, we’ve come out on top. We’ve bought a house, a car, and he is approaching a career. So, I’ve decided to go back to school. In the wake of hardship, I’ve grown hardy. Understanding that I am able to fight in even the hardest of situations. A flower unwilling to wilt even in frost. So what am I doing to protect myself as I prepare myself my return in the fall?
First, I am taking the time to begin making lists now. Deciding what it is that I will need to manage my health conditions on campus. Things like medication organizers, and medical id bracelets. Apps which help me to manage multiple aspects of illness. Notebooks which aid in organization and note-taking to help with my cognitive symptoms. A good planner. And a backpack that won’t increase my chronic back pain.
Over the summer I plan on studying my schedule and learning it ahead of time. I will be notifying my professors and the school of my mental and physical health conditions. It’s better they know ahead of time even if it never makes a difference. After my experiences, and being aware of the stigma that surrounds Schizophrenia, I have decided to be open about it. That is the best policy (at least for me). Schizophrenia ISN’T the death sentence it was once believed to be.
With proper management and support, Schizophrenics can recover. We can return to functioning in our personal lives. And functioning in the community. Of course, Schizophrenia is a spectrum much like Autism is a spectrum. Even if Schizoaffective Disorder is on the more serious end of both the Bipolar Disorder and Schizophrenia spectrum. With energy and time, recovery is achievable. Even if Schizoaffective Disorder is life-long, it is still a life worth living.
Another important aspect of my return to school is that it’s a new school altogether. No reminders of my darkest journey with every step. No reminders of my suicide attempts by being on campus alone. I’ll never have to return to the emergency room that traumatized me. By starting on a new campus at a new school it’s a new beginning. And that’s important. It may be one of the single most important aspects for me.
So, by knowing what I need ahead of time. By preparing for classes with enough time. And by notifying my new school of my disabilities I am taking the stress out of a new experience. By being honest and open I am creating a positive relationship with this experience. I am encouraging the continuation of my recovery. I’m scared to return to school and to academic life. There is some doubt but in the shadow of hard work and treatment and support. I’m not afraid to say that I am disabled. I am not afraid to say that I am a Schizophrenic. And I am not afraid to say that I’m in recovery.
The only thing that I am afraid to say is that I gave up.